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That's pretty much it for the good news, oh wait I am negative for HPV so that is good news too

No Lipids were tested, so I guess Ill get that bad news next time.

Not so good news is Kidneys slipped a bit more and I'm at 35 GFR, I dont really know a lot about the numbers but Doc calls me a "Firm Stage 3". She has decreased my testosterone dosage by half thinking that the muscle build and the ensuing production of creatine may be contributing to the kidney problems. She also referred me back to the Nephrologist. She is puzzled about the continuing decline since Ive been off Truvada for over 2 years. I have to tighten up on my salt intake even more and she thinks the Nephrologist may want to put me on a CKD diet (chronic kidney disease diet). That will be terribly hard for me.

Getting a bit concerned about all that, but not really freaking out yet. Doc says even though it sounds bad it is still a long way to dialysis.

Pain issue- Over the past year I've been having increasingly worse joint pain, especially in my elbows and left hip and down my left leg, it feels like bone pain. I am very active and sometimes it is near impossible for me to do push ups, and it can be painful to jog at times, so it is affecting my love of exercise among other things, and the pain is increasingly affecting my sleep. I have been managing it with Tylenol but it has gotten to where I was approaching the max recommended daily dosage. So doc decided to put me on Tramadol. I'm not sure how I feel about that, one one hand I really need the relief but on the other I don't want to be on pain killers for any extended period of time. My experience with pain killers is that it depresses my activity and mood, and makes me constipated.

I discussed this pain issue with our resident bitchy nurse, MissP, and she thinks it is too much drug (opiods) for what I am experienceing. She may be correct. Although I think part of my docs reasoning was to get me away from the Tylenol, and of course I cannot take any other OTC pain reliever due to my kidneys. Im also a bit concerned that no real effort was made to diagnose the problem, other than a "lets wait and see what happens", and a cursory questioning about family history of Rhuematoid Arthritis (which there is none).

Any input on the joint pain/tramadol issue? Any suggestions on an alternative med I can take rather than an opiod?

For the record, my issue isn't just the Tramadol which I could understand perhaps for a short period -- not to mention pain issues and measuring them are not precise. But your doctor gave you a very large script and enough for instant refills for four months with no follow-up. Why isn't she referring you to someone that can zero in on the cause of this if it's been going on as long as you say and is as severe as you claim?

I'm just not comfortable with it, and there's plenty of documentation that opiate medication is given out in a *cough* speedy manner in the region of the country in which you reside. But you're right that it probably has much to do with your kidney issues, which I can't possibly comment on. I suppose I would have at least queried my doctor more on this decision to be comfortable with it, as well as why I wan't being referred for physical therapyand then after that if no improvement to a rheumatologist or whatever else would be more appropriate than just throwing you some pain killers. And from you last comment about family history and arthritis you now seem to agree with my previous comments via SMS texting.

btw, it might help to try chondroitin sulfate for joint pain like my doctor just had me do -- try 250mg two capsules twice daily (or as I am doing 500mg twice daily). You buy this at a vitamin shop. IIRC my doctor said it takes a couple of weeks to feel improvement from this, and as I stated I am also beginning physical therapy and had knee X-rays done. Depending on how that pans out THEN he would have me see a rheumatologist or something. I was also put on an NSAID but she's probably avoiding that due to kidney issue, understandably.

The bottom line is I can't say your pain level is "x" compared to my pain level. Maybe my tolerance of pain has built up over a longer period of time.

Sorry to hear about the ckd decline. I sure how they can stop its progression.

178.2 sounds pretty good. How can you manage such a reasonable weight with all the crap you eat? Are you really shopping at Whole Foods and then posting that your eating at Popeyes? It's all a rouse isn't it?

Low salt, keep that blood pressure low, no ibuprofen.

Hate to sound like a hippy but have you considered some medicinal Mary Jane? I agree with you and P about the opioid hesitation.

The chondroitin is an option too, I give that to my dog for his achy hips.

Perhaps you could use something over-the-counter and just use the Tramadol for breakthrough pain? If you're uneasy about pain meds in general, I agree that you should consult a pain specialist. I'm sorry your having a rough patch of it. I also think weed would be good but you have to be able to function, plus it's still illegal here.

I avoid Tylenol due to how hard it can be on your liver, but I take Advil frequently. (1 time a week, and bad weeks up to maybe 4-5 times, with occasionally going a couple weeks without any. ) So how bad is that for the kidneys? My kidneys are performing in normal range, but it has creeped up to borderline on the protein content in my tests and my doctor said that was to be expected.

I can't imagine dealing with my headaches without some sort of pain management, if I ever get caught without Advil and don't take it in time, I have a good 6 hours or so of blinding pain that makes me flee all light, sound and sometimes touch to the degree that is even possible.

Well I hope you get something worked out for your pain WillyWump. Thanks for posting, now I have more to go look up.

Sorry to hear about all these health concerns -- I know you're a Granny and all, but you aren't THAT old.........

Two things:

1 -- Take better care of your diet - even if they don't put you on the CKD diet, you really CAN (and probably should) look at eating a bit more healthy -- especially kidney healthy. Salt is everywhere in that processed and fast food you seem to fancy.

2 -- May be time for some second opinions on your pain (not just Miss P -- though she makes much sense here and I'm sure is looking out for her Texas man meat). A pain specialist probably makes a lot of sense about now, given your limited OTC options.

1 -- Take better care of your diet - even if they don't put you on the CKD diet, you really CAN (and probably should) look at eating a bit more healthy -- especially kidney healthy. Salt is everywhere in that processed and fast food you seem to fancy.

Time to start cutting as much sodium as humanly possible out of your diet before the nephrologist opens a can of whup-ass on you.

Regarding the pain - I agree that you might want to try pot. I know it helps me with joint pain - some days it was the only way I could move around without pain when I was on the hep C treatment.

I can't imagine dealing with my headaches without some sort of pain management, if I ever get caught without Advil and don't take it in time, I have a good 6 hours or so of blinding pain that makes me flee all light, sound and sometimes touch to the degree that is even possible.

Pitt, it sounds like you're describing a migraine. Have you ever tried any meds from the triptan class? I use Sumatriptan for my migraines and it really works, much better than any OTC meds I've tried over the years. Something to discuss with your doctor. (BTW, Sumatriptan has no adverse interactions with any hiv meds.)

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

The Pain issue is very subjective , it took me 3 years to fully accept my Pain controll doctors advice and take the pain meds regularly and not when the pain was too much. I think I have tried most off the pain controll drugs and I did not like Tramadol, I realize that I am coming from the other side off the scale but I still remember how low I got trying to put up with pain and the relief when I finally accepted the Pain control Docs advice and found the right combination off drugs for me.

I agree with MissP I would want more investigation into the reason off the pain , at least X-rays off the areas affected and the advice off a Pain control Doctor, but I am glad I am no longer trying to put up with the Pain.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

I just want to revisit the issue and state that I am not anti-pain management at all when necessary. I was one who encouraged someone-I-will-not-name here on the forums for a year behind the scenes to take his pain medication regularly and not "as needed" similar to what Theyer just stated. I just think it's odd to give out four months of pain meds with no further investigation, that's all. Why no discussion about physical therapy -- that's the usual first course for joint pain, plus some imaging of some sort.

Frankly I fully expect in my current situation to have to resort to pain management in the future, but my doctor is exhausting other alternatives until we reach that -- and yes, this was all discussed and I signed off on it.

Pitt, it sounds like you're describing a migraine. Have you ever tried any meds from the triptan class? I use Sumatriptan for my migraines and it really works, much better than any OTC meds I've tried over the years. Something to discuss with your doctor. (BTW, Sumatriptan has no adverse interactions with any hiv meds.)

Ann, thanks for the suggestion. To date I have never considered taking anything other than OTC remedies. I think I have sorta tried to just "deal" with it, but over the years, I find myself really questioning why I need to by the super-size walmart bottles just to keep it handy. I'll ask my doctor.

The Pain issue is very subjective , it took me 3 years to fully accept my Pain controll doctors advice and take the pain meds regularly and not when the pain was too much.

What does your pain stem from? Is it your joints as well?

My pain is not chronic, I've gone all day today without any to speak of, even my elbow is pain free right now. But when I do get it is pretty bad, especially in the hip. Sometimes it has gotten so bad it is difficult to get up from a seated position and walk. Sometimes the pain will last all day and night. It all just depends and I cant really put my finger on what brings it on. I'm assuming its arthritis/inflammation related.

I took a Tramadol yesterday afternoon (had moderate elbow and hip pain) and while it took the pain away completely it also made me a bit spacey. So not sure thats going to work for me during the day If I need to take it. I like the idea of pot, but again I cant be smoking it during the day and expect to get anything done.

To Ann and buggyboo, Yes I have cut back on fast food dramatically and intend to do so even more. It's my damn Mexican food that I am going to struggle with. The RDA of sodium intake is 2500mg, and I doubt any of us are able to abide by that, but I need to start working towards 1500!

To Ann and buggyboo, Yes I have cut back on fast food dramatically and intend to do so even more. It's my damn Mexican food that I am going to struggle with. The RDA of sodium intake is 2500mg, and I doubt any of us are able to abide by that, but I need to start working towards 1500!

It's called "make all your food at home" -- just don't eat out. EVAH. Or if you do limit yourself to once a month.

I had extreme PN from I guess too high a dosage off ddi , Then after the first and then 2nd chemo further damage to the nerve systems. Plus osteoporosis off an 75 to 80 year old ,the day I was told that was oh so cheerfull. Bone breaks and oh I love this one General HIV damage body pain . However on the other hand I am hear to tell the story , and have twice been discharged from Palliative Care Treatment Teams . Oh and Rot Jaw but its called something else so forgive me Its 2am I have had a dee-Lite/George Clinton/ sly/Robbie / Pulp/Suede u tube extravaganza and much chair dancing.Nite nite i wouldn,t dance with another.........groove is in the heart........woodchip on the wall.......m

PS Given that you are very active , Will , I would not be at all surprised to hear that you are carrying a sports injury also your description off the Pain Hence the X-ray and possably physio people to check the bones and muscle groups , is a route I would off expected from a Doc.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

To Ann and buggyboo, Yes I have cut back on fast food dramatically and intend to do so even more. It's my damn Mexican food that I am going to struggle with. The RDA of sodium intake is 2500mg, and I doubt any of us are able to abide by that, but I need to start working towards 1500!

Food, now there is a favorite topic of mine! I'll just say that it takes some time, but if you cut back on the salt, you will find that your tastes will actually adjust. My partner used to way over indulge on salt and with a bad heart, was very worrisome. Of course as he doesn't grocery shop and barely knows how to use a microwave oven, I get to control that for at least two meals a day. It took a couple months, but he now is quite happy with what I make that usually has no or very little salt.

For Mexican food, I agree that there is often a lot of salt added, especially on chips and in the cheese. You can however just up the spices and fresh ingredients and you'll have a nice flavor.

If you not big on cooking, one easy dish is to grill or stir fry some chicken with with lots of garlic, onion, tomato, cilantro, chilies, oregano and cumin make a nice base flavor profile. Chopped squash is really good too, instead of chicken or mixed in. Toast a tortilla, put low salt beans (black or pinto, mashed or whole) your chicken chopped up, and a sparing amount of cheese.

Pensey's Spices offers several Mexican spice kits without salt, and you can order online.

Hoping for the best for you dear Will (who is tied for my favorite Texan). Eating better is always the best option, I too enjoy and indulge in all kinds of foods. As we get a little older (though you look mahvelous dahling) we need to make adjustments. Hope your pain goes away and the numbers get back to what you want to hear.

Hugs, Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

Do you believe tenovir is responsible (or partially responsible) for the kidney injury, and possibly the bone/joint issues?

I know I've read that kidney injury is seen rarely, and mainly to non-whites, diabetics, or those with a family history. However, I also remember watching a video from an AIDS conference, where they said much more injury was seen in the real world, than was seen in trials and in the initial years on the market.

I had extreme PN from I guess too high a dosage off ddi , Then after the first and then 2nd chemo further damage to the nerve systems. Plus osteoporosis off an 75 to 80 year old ,the day I was told that was oh so cheerfull. Bone breaks and oh I love this one General HIV damage body pain . However on the other hand I am hear to tell the story , and have twice been discharged from Palliative Care Treatment Teams . Oh and Rot Jaw but its called something else so forgive me Its 2am I have had a dee-Lite/George Clinton/ sly/Robbie / Pulp/Suede u tube extravaganza and much chair dancing.Nite nite i wouldn,t dance with another.........groove is in the heart........woodchip on the wall.......m

PS Given that you are very active , Will , I would not be at all surprised to hear that you are carrying a sports injury also your description off the Pain Hence the X-ray and possably physio people to check the bones and muscle groups , is a route I would off expected from a Doc.

My God Theyer, I cannot imagine living with that much pain. I fell like a pansy for complaining about an elbow and a hip.

and you're right. I think I will revisit my doc and ask her for an xray.

Hoping for the best for you dear Will (who is tied for my favorite Texan). Eating better is always the best option, I too enjoy and indulge in all kinds of foods. As we get a little older (though you look mahvelous dahling) we need to make adjustments. Hope your pain goes away and the numbers get back to what you want to hear.

Do you believe tenovir is responsible (or partially responsible) for the kidney injury, and possibly the bone/joint issues?

When we first saw the kidney issues I was on Tenovir and the docs were CERTAIN that was the cause, and they were also CERTAIN that kidney function would return after cessation of Tenovir. Now she says she doesn't know what is causing the continued decline.

But we are going to have to figure this out otherwise I will be on dialysis at some point

Although like HIV treatment there has been huge progress in Cancer treatment and outcomes what does not get discussed is how violent the treatment often is and the life long damage that can be the result off treatment .

As the recent conference in Barcelonaaidsbarcelona2013.net/ covered there is a greater chance of Lynphoma,s /Birkets / Lung cancer in Hiv infected people .The new HIV ward at my Hospital has a day chemo treatment center as well as 19 single rooms .

I benefited massively from the work off the Pain control Doctors, without the pain meds the damage nerves just send static to the brain , with the Pain control the static is turned down. The stiffness /balance problens /toilet sensations / you can learn to adapt . A slight illness and I have to use more pain controll, managing or trying to the balance between curing the pain and dealing with the digestive disruption pain meds bring.

And as I often bang on about do not underestimate how damaging putting up with constant pain is .

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Sorry to hear about your pain issues. My partner has leg and hip pain but hasn't really pursued having the problem examined. I have not had pain problems but I too have kidney issues. I went to a nephrologist twice last year and after various tests, ultrasound and CT he said that my creatinine level says I have stage 3 kidney disease but every other test says my kidneys are fine. My doctor is just monitoring it at this point. My annual complete physical is next week and I am not looking forward to it.

Actually my partner had a heart attack two weeks ago, in Tokyo of all places! He is out of the hospital and in rehab so we have started a low sodium, heart healthy diet. I've never been a fan of salty food but when you start counting sodium mg it can be pretty restrictive. We are eating a lot of vegetables and fish.

Actually my partner had a heart attack two weeks ago, in Tokyo of all places! He is out of the hospital and in rehab so we have started a low sodium, heart healthy diet. I've never been a fan of salty food but when you start counting sodium mg it can be pretty restrictive. We are eating a lot of vegetables and fish.

You kept that quiet, Ford! I hope he's experiencing a speedy recovery. That must have been frightening for the both of you, particularly with him being in a foreign country. Was the rehab place in Tokyo or at home? Please pass on a "get well soon" from me to him, along with a hug for both of you.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

You kept that quiet, Ford! I hope he's experiencing a speedy recovery. That must have been frightening for the both of you, particularly with him being in a foreign country. Was the rehab place in Tokyo or at home? Please pass on a "get well soon" from me to him, along with a hug for both of you.

Ditto, Ford , Kidney and heart household , keep well and best wishes to you both.

7 years ago on the Aberdeen Mens Heart attack Ward I heard one 50 something Scots man say reading his new diet chart---" Avocado thought that was a feckin bathroom colour "

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Yes, really Ford, that must have been a toll for you and your partner. I wish we could have been there to support you. You've been here less frequently though but hope everything turns out well for both of you. You realize folks are fond of you here from over the years.

Sorry to hear of your kidney and pain issues. Seems like lots of good advice given and you are on the right track.

That diet change should also include salt-free margaritas. 1/4 tsp. of salt has roughly 500mg of sodium. I tend to be a bit heavy handed with the salt myself so I understand your sorrow in having to cut it back drastically. I agree with Miss P about cooking your own meals. It's really the only way you can control your sodium intake. Who knows, maybe you will learn to enjoy cooking and become a gourmet chef.

I'm also on testosterone therapy and my creatinine levels have been hovering on the high end of the scale for quite some time. My creatinine level was around .8 before therapy but has been in the 1.0-1.2 range for the past 2 years. I know how cutting back on Androgel affects my energy level. (I'm on a fairly high dose and my levels are still below the normal range) Have you noticed any changes? Hope your reduced dose helps!

I inject 4ml of Testo every 2 weeks (which is alot). So next time I inject I am supposed to go down to 3ml, then stay there for a month, then down to 2ml. So after a month or so I will be down to half what I am taking now. Im not really sure how the decrease will affect me, it will prob be negligible.

Ann, thanks for the suggestion. To date I have never considered taking anything other than OTC remedies. I think I have sorta tried to just "deal" with it, but over the years, I find myself really questioning why I need to by the super-size walmart bottles just to keep it handy. I'll ask my doctor.

Pittman--had Ann not written I was going to. If I didn't have Sumatriptan life would be miserable. My migraines are nearly all weather -induced. This season's been a rough one already.

WillHave you ever tried acupuncture? When I've had some pain issues to deal with it 's been beneficial. You note loving exercise. Have you taken enough of a break to allow the inflammation to simply calm down? Used ice , rest, etc?

I inject 4ml of Testo every 2 weeks (which is alot). So next time I inject I am supposed to go down to 3ml, then stay there for a month, then down to 2ml. So after a month or so I will be down to half what I am taking now. Im not really sure how the decrease will affect me, it will prob be negligible.

Tramadol isn't a very heavy narcotic, it's on the "light" side. But yes, I would definitely want a reason as to the source of the pain. Have you ever read about avascular necrosis? It seems to be a growing issue with HIV+ people. One of my former clients had both hips and both knees replaced due to this. I have it in my knees and it is very limiting and painful.

I also agree with seeing a pain specialist. I'm surprised your doctor hasn't referred you to one.

Good luck with all this, sending huge hugs!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Tramadol isn't a very heavy narcotic, it's on the "light" side. But yes, I would definitely want a reason as to the source of the pain. Have you ever read about avascular necrosis? It seems to be a growing issue with HIV+ people. One of my former clients had both hips and both knees replaced due to this. I have it in my knees and it is very limiting and painful.

I also agree with seeing a pain specialist. I'm surprised your doctor hasn't referred you to one.

Good luck with all this, sending huge hugs!

Thanks Betty for all the info. I looked up avascular necrosis and that sounds horrid. Yeah I'm going to ask to get some xrays. My Elbow has bothered me all day, and the pain is also now up my forearm from the joint just a little bit. I took my Tramadol about 5pm and it dulled it but did not take away the pain completely. But hey its a vast improvement over popping a handful of tylenol and excedrin all day long.

btw, I hope your doing well with that hip, was really worried about you. Huge hugs right back at ya